Want to Know About Autism? Ask An Autistic

There’s a blog I love, written by E. called The Third Glance. I found it last winter. Written by a PHD student, E. describes her life, her passions, her studies, while detailing her thought process while socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t understand her. E.’s compassion for humans and their neurological differences is striking as one considers the stigma she experienced growing up Autistic. The Third Glance was one of the first blogs I found in my search for Autistic Adults. E’s compassion and kindness shines through all her posts no matter the subject. Her determination to give people the benefit of the doubt was something I was astonished by, particularly during those first few months of my discovering Autistic blogs and reading that so much of what I’d done was not as altruistic as I’d believed.

When Em was diagnosed, the words “Autistic adults” were not uttered. Ever. We heard about how imperative it was to immediately implement early intervention, we were shuttled off to get an “independent diagnosis,” we were advised to start investigating ABA therapy, we were inundated with ABA therapists, speech therapists, occupational therapists, a social worker came to our home once a week, team meetings were held regularly, we were trained to continue Emma’s ABA therapy after the last therapist had gone home. We were advised to put Em on a gluten free/casein free diet, we were encouraged to read the thousands and thousands of pages of material thrust at us from a wide variety of well-meaning and well intended people.

In that first year of Em’s diagnosis, I was well versed in various theories regarding gut issues, lead levels, mercury levels, toxicity in our food and water, and I could reel off at least six different unpronounceable ingredients in vaccines. I’d read at least 30 memoirs written by parents of Autistic children as well as books with titles such as A Parent’s Guide to Autism: Answers to the Most Common Questions, The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders, Handbook of autism and Pervasive Developmental Disorders and Biological Treatments for Autism and PDD. I’d taken Em to cranial sacral therapists, homeopaths, lead specialists, developmental pediatricians, nutritionists, allergists and a DAN (Defeat Autism Now) doctor. I knew about ABA, VB, RDI, PECS and DIR therapies. I read and reread Catherine Maurice’s Let Me Hear Your Voice with the same dogged, determination and devotion evangelicals read the bible. I knew about sorghum flour, rice flour, garbanzo bean and fava bean flour. I honed my cooking skills on perfecting a gluten-free/casein free birthday cake for Em’s third birthday with platters of tasty GFCF finger foods, which Emma refused to touch, let alone sample.

Autism, seemingly overnight, had become my focus. I was set on fighting it. I was engaged in nothing less than a war. My weapons were my determination, my tenacity, my stubbornness and my love and devotion for my daughter. Everything else came to a screeching halt. Everything else fell into line behind my research. I was on a quest. To my way of thinking, I was on a mission to save my daughter’s life.

When my husband, understandably alarmed by the fervency with which I threw myself into my research, suggested I was spending too much time searching, I was furious. I railed at him, enumerating all the things I was doing with the sole intent of saving our daughter. I was furious that he seemed unable to fully understand the battle I was waging. It never occurred to me there was another way. It never dawned on me I was battling windmills.

That Autism was the enemy, something to be vanquished, defeated and destroyed, I did not question. I didn’t have time to question, I was too busy dealing with the Board of Education, therapists, Doctor’s appointments, tracking down every “cure,” and baking foods my daughter wanted nothing to do with. Every time I turned around someone was sending me a link to a new “cure” a new treatment, a new therapy, a new “miracle worker.” Countless people would begin a conversation or email with, “Have you tried…” “Have you heard of…” and I would grab a pen and begin taking notes. Doggedly I pursued each and every tip. Determined not to leave a single stone left unturned, my days and nights were filled. I was busy. There was no time for calm contemplation, there was no time to sit and consider the path I suddenly found myself.

The Seven Year War.

And then… what happened? What changed? Everything. I began to question the “truth” about autism. I began to question the dogma. I began to question the “facts.” It was inevitable, I suppose when you read as much as I do. But the single biggest change occurred because I found Autistic Adults like E. I’ve written about this before, ‘here‘ (the post where E. first reached out to me in the comments section) and again ‘here.’ I won’t go on about that process, except to say this – there is something about the immediacy and the interactive quality of a blog that no book can replicate. In addition, a blog written by someone who is Autistic is far more interesting to me than anything I’ve heard from researchers, specialists, therapists, teachers, doctors because Autistics are talking about their lives, it’s not a theory, there’s no speculation.

Want to know about Autism? Ask Autistics.

Thank you E. for reaching out to me. Thank you for generously holding out your hand to me in kindness and friendship. Should all parents be so fortunate as I have been.

A quick aside, E. was also one of the creators of the Autism Positivity Flash Blog (see badge on right side of this blog) where a group of bloggers reached out to hundreds of us asking that we write a post in answer to the google search words “I wish I didn’t have Aspergers.” If you haven’t gone to that blog, do. It’s a veritable who’s who in Autism blogging by Autistics and parents coming together to support someone on the spectrum.

And as an aside, to anyone reading this, I am happy to have (written) non-judgmental conversations about autism. While I obviously can’t speak for everyone or everything, I can speak for me, and that can be a very powerful and useful thing. Please, please, feel free to contact me, either via email or on my blog.

LOL! Oh no! E. Duly noted. No group hugs for E. When I met Ib (in real life) I didn’t know if she was a hugger or not, so I kind of stood there and waited. I’ve learned to do that! Hugging = not necessarily the desired way to show connection. But then Ib hugged me! 😀 Will have to ask her about group hugs, but not with you, E. Hey Ib – group hug? Um, with someone other than E?

Real life group hugs = awkward because where do you put your face? In real life I try to do things with my voice or face that will convey the intent of a hug much more often than I actually touch folks. (Thanks again to theatre people teaching me how to do this.) Group cyber hug!!!!

Yeah, about that whole “face” question… It hasn’t been thought through. In fact, it can cause a certain degree of awkwardness in people of different heights who try to hug each other, forget a group. Just thought I’d throw that out there..

umm yeah, awkward. I don’t mind side hugs… then you don’t have to worry about where you put your face, and there’s only some contact. (I’m not super tall – my face always goes awkward places. Either the person is just a little taller than me, and my windpipe gets smashed on their shoulder, or they’re lots taller, and my face goes in all sorts of awkward places – armpits, breasts, one hug involved someone’s belly… you get the point…)

No hugs for me either. Irish gene pool. Ariane, another great post. As the husband mentioned above, it should be noted that while I warned you from time to time that your obsessiveness was taking a toll on you, were it not for the same relentless investigations you have continued to pursue, we would be right where we had been for years. Not knowing anything about the autistic mind other than what non-autistic people were telling us — who ultimately, don’t know shit. Thanks for shining the light in my direction. I’m beginning to learn, and am very grateful for that.

Wait! I know the answer to this because of my enhanced theory of mind. Richard wants to kiss you and marry you and stuff (as evidenced by the evidence) so therefore when you hug him he is not exactly cringing. You are welcome: I came back online just to offer this genius psychic revelation due to my legendary communication skills. 😉

As you know Ib, I have come to rely on just these sorts of brilliant insights from you. As for your legendary communication skills, I rely on those too. Now when exactly are you coming home because I really miss our chats (examples of your legendary communication skills)!!

So thankful for Autistic voices like E and others! It has made all the difference in our journey too. This is a very honest post, and I appreciate that. While I did not wage a 7 year war on Autism, (my boys are only 4) I was headed that way myself, just because of the way our society handles parents/families newly indoctrinated into the Autism community, as you clearly described here. That approach, to fight Autism, defied the true me however; someone who has always had a great love for diversity. Once I realized that my children had every right to be Autistic, every right to be disabled, every right to be who they are, once I could see that Autistic was a kind of person and not something to be feared, well, I changed my mind on a lot of things in this life. What Autistic bloggers and advocates are doing for us Mothers (and parents and families and the world…) Ariane, is giving us an opportunity to learn about and offer unconditional love. They are giving our children the opportunity to receive it! The outside world hasn’t even imagined it possible yet, to love Autistic people as they are, to support instead of cure. I appreciate this post because it shows that process that a Mother must go through, in order to get to her authentic child, in order to truly begin to understand Autism, and it shows how powerful Autistic adults are in that transformation. It is the only way. Thanks to all here!

So glad to see your posts, and how true they are. A lot of people seem to lose sight when they get the initial diagnosis. They forget that their child is still a child, and focus on the fact they are now confirmed to have such and such disorder, and so it needs to be ‘fixed’ before they can go back to being a kid. I can be thankful my mom was never like that, although we didn’t really know what autism was back then. I was also a very “spacey” kid, always in my own little world but happy to comply with just about anything you wanted me to do. Haha.

Thanks for the great post! Hope more people see this and start coming to us, I’m sure a lot of us don’t mind answering questions for concerned parents 🙂

Hi Sila, really appreciate your words. I know when I first started reaching out to some of the blogs written by Autistics, I was very nervous and worried that my comments would be met with silence. Those who took the time to reply meant so much to me, I was so grateful, I promised I would try from then on to do my best to respond to people when they commented here. The idea that some Autistics might be willing to speak to parents was also something I have never assumed, but to those who have, who have extended themselves I am so grateful. It has made an enormous difference in my life and in the life of my daughter. Thank you for reaching out Sila. It means a great deal to me.

Oddly enough this issue came up with my doctor today. He was wading through the articles on autism I wrote a dozen or so years ago and one of them was about the early days of internet support. How there was a pretty big rift between the various parent supports and most of the adult autistic community. That many parents even now tend to view those able to articulate what it means to live with autism for them as somehow fundamentally different from the child who is the item of their concern.

During those years I spent a lot of time trying to help parents on IRC even though the reception would vary and there was one list serve that was so hostile for the most part that there were jokes about having people rotate on and off it like a combat zone. (98 percent of the parents still convinced it was vaccines and 60 percent or so still swallowing whatever new snake oil is out there sadly)

One of the things I mentioned though as a good shift essentially came down to what I termed some of the more visible and vocal parents promoting how it’s been a help to you.

I am a totally failed blogger. I occasionally make a blog and inevitably take it down. I think the main block is the same as writing new articles. An idea of what to write about refuses to spontaneously come to my head.

We used to tell parents who came into the IRC chat room totally distraught about the diagnosis that their child was actually still identical to the day before. That only the label for part of what went on with their child had changed and as hard as it was for them it didn’t necessarily mean the grim and bleak future they pretty well immediately envisioned, Having been considered pretty low functioning and probably retarded in my early days I had an advantage as far as being a tangible representative of how little experts know and yet their willingness to make long term prognosis in the face of that gap in knowledge. Was a comfort to some but others you couldn’t stop from going for every great new treatment out there.

I nearly got banned from the list serve mentioned above when I responded that I would be autistic in the afterlife when people were prattling on about how their kid would finally be cured when they died as they will be perfect in heaven. My notion that I was as my creator intended me to be and so he would not be so cruel as to fundamentally alter me for the afterlife… Well you would have though I had said something truly heinous. I still am not clear why after all these years it is okay for them to speculate that G-d would cure their children in death but I couldn’t say that I was certain I was loved as I was by G-d and not intended to be someone else. Of the two view points mine still seems the saner choice. I could be entirely wrong about it I suppose but given how you have to live the life you get I can’t see how I could if I thought like them.

Gareeth, I just have to tell you, I LOVE reading your comments. I am sorry you find it difficult to blog, because I would read anything you wrote anywhere. Seriously. In fact, I’m going to look for your blog and will follow if I can find it. Yeah, the whole after life thing is one I’ve never understood, in part because I don’t believe in the after life, but even if I did, I’d agree with your prediction.
Having been one of those crazy parents who wondered whether vaccines had exacerbated my daughter’s autism, to now feeling somewhat foolish that I ever had, I can say that I often wonder what our lives would have been like had a I known someone like you. I like to think I would have felt the same relief, hope and joy I feel now whenever you write. When you describe your childhood, when you write about how you were considered pretty “low functioning” I feel such hope for my daughter. Because as you write, this idea that we can predict what the child will become is ridiculous. There is such hope. Given the support, given the encouragement, given faith from another human being who believes in you, all of that combined can be a powerful incentive. I think we underestimate that. I think we have a long way to go in our thinking about that.
If you think of the truly wonderful teachers who’ve been able to inspire whole groups of children to move beyond what is expected of them, so many of those children have gone on to greatness. But we have to believe. We have to believe.
Thanks again Gareeth. And now to track down your blog…

Gareeth, I love your comment about still being Autistic in the afterlife. Why not? Being Autistic is just the way you are.

In a related thought, if you believe in reincarnation and the idea of life as a school of sorts, what if we choose to be Autistic in this incarnation is order to both learn, and teach those around us? That puts a whole different perspective on things…
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For parents of Autistic kids, well, a diagnosis doesn’t really change them. They are still your kids who you love and care for. As a person who was diagnosed with Aspergers as an adult, I must say that the day after being diagnosed, I still got up in the morning, brushed my teeth, got dressed…well, things were still the same. The only thing that changed was knowing what had been going on with me all my life. This knowledge has been empowering and helped me to better manage my life, and (a big thing), not feel guilty anymore for being me and not like everyone else. I was sure getting tired of feeling bad about who I am and having people try to change me. Now I know I’m not ‘broken’ and don’t need to be ‘fixed.’

So the internet has been great to connect with others on the spectrum and read their blogs, knowing that I’m not the only one out here. And I completely agree that if you want to know about Autism, ask someone on the spectrum. People need to realize that all Autistics, adults and kids, have a voice, and this voice needs to be heard. Groups that purport to speak for us, yet don’t let us speak for ourselves, need to know that we are here, and we aren’t going away. If anything, we are speaking up more.

And everyone please remember, “If you’ve met one Autistic person, you’ve met one Autistic person.” We’re not all savants, not all math geniuses, not all computer nerds, etc. We are all different! So if you want to know more about us, ask us!

Yay! Thanks for commenting Michael, it’s good to hear from you and I’m so glad you no longer feel broken or in need of fixing! That’s perhaps one of the most insidious things about the current misconceptions around Autism. By believing these perceptions people (unwittingly or not) feed into those feelings that Autistics then must contend with in addition to everything else.

Again, I am so thankful to have stumbled across your blog. Emotions are stirring, I’m not a big fan of emotions. In the past 18 months I’ve gone from denial, anger, acceptance, optimism, denial again, back to acceptance and was in the begining stages of putting on my war paint. Not sure when or where I am going to land but reading your blogs are giving me great deal to think about. Thank you for sharing!

So glad you reached out! I cycled through all those emotions you listed and still do, though not as often and now my anger is no longer about autism but at how Autistics are treated and perceived. One of the biggest changes is in my level of stress and worry. Where it used to be in the red almost constantly, it is now often nonexistent or very low! That alone is enough for me to know I’m on the right track! Keep sharing and reaching out. There are a great many of us!

Hello,
It is thanks to your blog that I was able to just stop. Just stop trying to ‘fix’ my autistic daughter, Piper. She is 4. After spending hours reading I literally didn’t know what to do with myself. I had spent so many nights researching the next thing I should try. It gave me time to cry and let go of all the fear and frustration and I think to really see with clarity. Words cannot express how grateful I am. Thank you.

Can I ask you; What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benifit to Emma when she was still too young to type? How would you have gone about learning assuming competence?
I know these are big questions and it’s not my intention to make you feel that you didnt do the very best that you knew at the time.
With gratitude,
Rowan

This mindset has always bugged me, although often Autistic folks go through their own process of acceptance.

People generally talk about Autism as a “disorder” or something to be “treated.” In fact, I’ve been doing some poking around on the web about autism and Virtual Reality, and literally everything I’ve found so far is “Behavioral Therapy” kinds of shit.

I am a high-functioning autistic person, and I don’t view this as a bad thing. The only reason it’s hard in the first place is that people don’t really accept us.

The world just needs to get over itself and figure out we are here to stay.